The adjective that was first used by doctors to describe Brenna is still used often today by her therapists and physicians: “spitfire”.

Brenna was born December 19, 2011, with harlequin ichthyosis. We were extremely fortunate to have a wonderful pediatric dermatologist in our town who came to see her in the NICU just a few hours after birth, but had already diagnosed her with HI based on a photo that the ob/gyn had sent him via text message.

We stayed away from the Internet for a few days, because we wanted all information to come from our doctors who were specifically treating Brenna. Our dermatologist told us about FIRST right away, so I contacted them and they connected me with some other families affected by harlequin, which has proved to be an incredible resource during this journey.

From the beginning, Brenna has been a fighter. She contracted an aggressive blood infection at five days old that left us praying for a miracle on Christmas Day. A surprise to many, she battled through it, and then underwent eye surgery at three weeks old, to lengthen her eyelids pulled tight and flipped out by her skin.

We were so thrilled to bring her home from the NICU after 5 weeks – when we were originally told it would be months – but Brenna endured a lot of ups and downs during her first year. She fought several skin infections, and in the summer of 2012, we had to make the tough decision to have a g-tube placed in her stomach. While she had originally been a wonderful eater, she just wasn’t keeping up with her nutritional needs and was experiencing dehydration and weight loss.

Finally, our family experienced a little relief in the fall and winter, as Brenna stayed healthy and began to pack on the pounds! Of course, we still have many concerns – mobility, as she is not yet walking or crawling, and oral eating, as she is letting the g-tube do the work for her… and of course always concerns about germs! – but, we are finally feeling a sense of “normalcy” as her intense skin care routine is now second nature to us. We are so blessed by everything that Brenna (and her older brother Connor) has taught us about unconditional love, acceptance, and gratitude.

Brenna’s smile lights up our life, and she is more attached to her parents than any baby we’ve ever seen. We’ve definitely got our work cut out for us because of her spirited personality, but I have no doubt that her spunk has driven her to make it through all of the challenges she has encountered in her 16 months.

We are excited to see all that the future holds for our little “spitfire”!